Friday, September 16, 2011
... which is why I find it so odd that so many of them are allowed to be so robotic in their professional lives.
I get they need to remain detached. I get they need to be analytical. I don't get their reluctance to see a bigger picture than the one that is in front of them right at that minute.
Last night I stayed up very late making a spreadsheet containing all the pathology results we have ever received about Billy - blood, urine, spinal fluid, MRI, CT scans, nerve conduction studies, gut x-rays, renal x-rays, pithy anecdotes about the inside of his duodenum.
It was an interesting process, not least because I am not (repeat not) a systematic thinker. My idea of a system is a mud map. Numbers, charts and formulae are not usually my cosy bed buddies.
But they were last night.
And though there were interesting patterns (I coloured high results blue and low results red, just to amuse myself), I am obviously still no closer to understanding much at all about Billy's ongoing health. I finished my task, with a growing sense of grumpiness.
No, I hear you say. You? Grumpy? Never!
I wish I was citing the opening scene of the movie of my life, where a lightbulb (rising sun, angler fish, something bright and eye opening) appears reflected in my computer-screen-fatigued eyeballs as I finally crack the Billy code. Alas, it's more like a soap opera, where an ill-prepared, scruffy looking me walks out of yet another doctor's office clutching a soggy tissue and glaring at the receptionist for just a beat too long.
There's another light at the end of the tunnel, though. I'm hoping it is emanating from the nether regions of the geneticist we are seeing next week. I hope he's not feeling too much pressure. Even more, I'm hoping he doesn't take one look at my work of Excel artistry and decide I'm a (completely) crazy woman.
This goes to a wider issue in adult life, that I wish I'd never started to examine.
I grew up, for better or for worse, thinking that there were a few pillars of society that were constant and true. I hadn't really named them out loud, but now that the pillars are crumbling and I feel like a frightened 8 year old, I'm thinking they are - the health profession, law enforcement, the education system and perhaps politics. Religion, was easier to de-frock, when at quite a young age the nuns thought hitting me was a better option that answering my honest question about the chronology involving Jesus and the dinosaurs.
Police are still kind of OK in my book. I'm skeptical but feel we're likely to be in a better state than we were in Joh's Queensland when I was a kid, so you know... Also I don't actually do anything that would raise their ire, or challenge their professional integrity. We kind of leave each other alone.
Unfortunately, I can't do the same with pollies, doctors or teachers.
I think the Australian government (on both sides) are behaving like over-privileged children at a birthday party. Doctors I've dealt with a number of times and you are probably well sick of hearing it. And teachers...? Well, this week, teachers redeemed themselves just a tiny bit.
We had Billy's annual review at his school - an urban base school for children who can't attend school for a variety of reasons (illness, remoteness or a job in the movie industry... I know, random, right?) I was fully expecting a rap over the knuckles for not achieving enough, or filling out forms wrongly or something (gun shy? me?) and what I received was something very, very different.
I met a group of educators with passion, compassion and insight. They knew their business very well. They understood the pressures on an autistic child, learning wise. They had read their files. They had come prepared with ideas and resources.
The overwhelming message I took away was inspiring - a child with challenges should not be challenged by the education system as well. They should be inspired, supported and buoyed by the possibilities of learning.
Now, how many folk with autistic children would like to hear that little gem from their child's school...?
We can argue the relative merits of homeschooling another day, but for now, I'm loving educators that can come up with stuff like that.
It comes in a context of really shabby recent educational experiences for us. So seriously, they could have said, 'How's your day been?' and I would have burst into tears and kissed them. But these folk have gone a long way to restoring some faith.
Now... as long as I can get the doctors to agree, we can continue with this method of learning for another year. I am hoping, Dr Light Bottom (the geneticist), Dr Poo (though he is on my brown list right now) or the grumpy old paediatrician will sign the damn form. If they won't, I'm breaking out the snotty tissues and the piercing stares again.
I want to have faith. I want to believe. Like Bob Geldof says, I'd feel quite relieved if I could lose myself in irrational assurance that everything was going to be just fine.
But autism, growing up, being stabbed in the eye by Billy's old school... those things wore my love of pixie dust down to just about zero. Now, I'm working on the principle, that if you look me in the eye and admit we could all do better, I'm on your side.
So, Dr Light Bottom, are you ready for us? If I could ask a favour in advance, it would be... please, switch off your interface, and open your mind. I promise not to shake your hand and leave a damp tissue residue...
I'm trying my best (though I promise to take your advice on how to do better).
Posted by Valerie Foley at 2:59 AM